Paul
Simon wrote that line. It fits the paralyzing disequilibrium that
took me over as I was handed a game-changing diagnosis of tonsil
cancer. I wrote the following note on the subway home for the worst
case scenario. Fortunately it has proved, like Twain's rumors of
death, to be premature.
This
is that maudlin letter you dread from someone who
believes
you would actually
maybe
like to have a farewell note:
.
If
you get this I have navigated a dark corridor
descended
slippery stairs
to
black water's edge
stepped
into and pushed off waiting skiff
into
infinite
night.
This
calamity came upon me too unexpected and sudden to complete a proper
memoir - you may be relieved but really, it would have been a good
read. I'm not about to allow a newspaper to relieve my heirs of $900
for an obituary so please pass on this news to whom it may concern.
November
18, 2014
Lucy
died this year of cancer – I saw her on Friday, she died Monday.
Her husband Dick is fighting it as well, Wayne Klein, Ed Arnold, Herb
Greecy, Stan Sharshall, Mildred Thompson, John Fenton, Tom Wells, all tucked into
mortal coils of that awful finality. Donna has colon cancer,
Genevieve Arnold died, Don Welch died, my Father died, his sister
Murph and her daughter Phylis died, David had it, Lori died last
year, Diane has it... according to John Robbins, these United States
have the highest cancer rates on the planet, attributable in large
measure, to the outlandish influence corporations have on state and
federal legislators.
So
with this ominous background... In June I noticed what felt like a
hair in the back of my throat. I dismissed it as a new twist in my
usual spring allergies. Months later I flipped on a flashlight for a
look at my throat. I was appalled to see a prominent, gross growth
hanging back there. I called my dental hygienist, asking if she had
noticed. She asked me to come in. They thought it was tonsil with
some kind of growth on it. Wouldn't be overly concerned but do
have it looked at. Made an appointment with Dr. Turton to get an
insurance-required referral which took about two weeks, and one week
later a cancellation got me in Tuesday November 18th.
Dr.
Moore said, “Open,” and immediately, “It looks like cancer.”...
referred me to Dr. Patel, more waiting. Assistants Kelly and Martha
called me in, examined with a mini-camera - I could see the monitor,
looking at the tonsil and then down the nasal cavity (didn't hurt as
I expected but was certainly uncomfortable), macabre objectivity to
see the throat, the opening/closing flap as she asked me to stick out
my tongue or say ah... she was quite sure, it's cancer, … in comes
Dr. Patal, after one quick look says, “I'm 90% certain, a tumor -
squamous cell carcinoma.” T2 (size) ... 70% of those so diagnosed
are still alive 5 years later (very good odds for cancer he kindly
says but I am in shock).
Options
– after biopsy confirms: surgery - if this happens it means less
radiation/chemo, daily for maybe 2 weeks? All this needs clarifying.
Total treatment 6 weeks from start which is after meetings to agree
on strategy - “team” approach … Patel and Martha attempted to
be supportive, kind, empathetic, Kelly a more distant technician. If
nothing is done: 3 months? 1 year? Unknown time-frame but the
disease will grow, “explode” and take my life!!! Results of
biopsy in 2-3 days... from there meetings begin and treatment,
hopefully over by January and it doesn't exhaust our savings.
Side-effects:
no hair loss but beard will fall out – weird, and weight loss but
strategy to maintain, even a stomach feeding tube insertion as eating
may become difficult (lack of appetite, sores in throat). Will also
need physical therapy if surgery, if you don't use'em you lose'em
(muscles)... sounds like maybe a rough road coming up. Patel stared
sympathetically at me, giving me the opportunity to emote, and asked
how I feel... I was sort of at a loss but finally said, well, it's
bad news but ce la vie.... pause....what's next? Now, 3 hours
after being hit with this, I'm assuming a 6 week treatment then back
to status quo, maybe a healing time. But they did say 70% not
100% so anything can happen. This of course awaits us all, death I
mean, but as I told the dentist, NOT YET!
I
keep wondering who to brief on this, no one but Cyndia my first
reaction but then have second thoughts. I'll just mull it over. It
was hard to tell her that night, and hard for her to hear it.
Day
2.
The
content of my mind-chatter of course heavily involves this unwelcome
development but when I get into the now all that worry
dissipates, I don't have a problem NOW and yes there are things to do
but worrying, when I catch myself I try to become the observer...
when I'm successful it dissipates and I'm ok... I tell myself that
i'm going to go through a rough patch with some chance of being among
the 30% non-survivors... after all, I can't expect much more than 20
more years anyway, hell, 15 according to social security
guidelines... it comes sooner or later, I tell myself... helps some
though the nagging fear returns.
Dentist called, encouraging,
supportive... Clyde thinks they might be worried about being sued as
it seems they should have spotted this, was so obvious when I looked
with a flashlight... but i'm not interested in that... I could have
looked much sooner too. I'm going to deal with what's before me. The
hygenist asked if I'd goodsearched it but I said I was working on my
memoir... she took that as fatalistic but that's my current project.
She said radiation dries the mouth and saliva protects teeth so
that's a side-effect to look into, see if anything can be done. Also
supported the surgery-first direction if optional since it would
decrease the amount of chemo/radiation.
Day
3.
Reminding
myself to goodsearch squamous cell carcinoma... notified
Betsy, asking legal advice, Glenn due to anti-nuke obligations...
went to probably my last Wednesday music jam for awhile... didn't
mention the Cancer - was pretty good jam, Emma and Stephanie have
been coming and their singing is fine. Actually did one of mine, The
Patriot,... did a Band song … it didn't have chords so
I just sang and that felt pretty good... the disease would intrude
occasionally in my consciousness but not overly, more toward the end
when Todd, John and I were just chatting. As it turns out the
treatment schedule was not as imminent as I expected so continuing to
attend jams... went to jams at Mark's too... great fun... Mark and I
went until 3:30 a.m.
During
the night I wake preoccupied with it, fear... I take a breath, focus
on that... seems a reliable way to dismiss the fear, transpose it
into presence... some of it is telling myself that story, yes, going
to go through a rocky patch here but 70% chance... like going in for
a crown, more intense and serious (and expensive) but still, just a
procedure... the main thing is switching from being fearful to
observing the fear, usually a discomfort (pain) in chest and scary
thoughts... observing, when I think to do it, usually dissipates or
transposes.
Brother
Dusty called last night, had a good talk. He sent a great snow photo.
He also has a positive biopsy for prostrate cancer but confused by
multiple negatives so they're just keeping an eye on it. Maureen,
Steve and Gus all sent supportive missives, Steve mentioning Jimmer's
completion of chemo and being ok – that was good to hear, that it
can actually work. Willeye had a clever response also as did good ol'
Joe, made me drop a tear... went to Sandler Hudson Gallery today,
inquiring into stored piece. Debbie said she'd get it later and I
said I wouldn't be available until mid-January, she asked where I'm
going and I sheepishly told her, tearing up.
Day
4.
Disturbed
sleep, trying to be the observer but not as effective as yesterday...
fantasies and dreams not direct but obvious manifestations of worry.
A 9 a.m. phone call scheduled a petCT scan for Dec. 4... I had
forgotten they wanted to do those scans, head and full body so that
must mean waiting those results before treatment. Next week is
Thanksgiving so nothing prolly will happen then. I like having more
time yet wonder whether the C. can be spreading....? I'm turning this
over to the experts and getting advice from various people on second
opinions, alternative treatment or accompanying traditional with
alternative... Simpson Oil, derivative of pot... miracle drug
according to niece Lisa... book recommendations from Glenn and
Kevin... I keep thinking if the 70% is to be believed then to try
some untested alternative, “snake oil” or not, would be fool
hardy – it may actually be what it claims but I'm as yet
unconvinced, not inclined to take that route. Most of the time i'm
ok, much of the time doing something, like the memoir, music or
running errands – but stabs of fear occasionally intrude and I
remember, I have cancer... OMIGOD! Try to be the observer, dissipate
it... stick to that strategy, like the song says, whenever you
think to, take a breath, let it out.... here you are.
Dusty
called just after I got the appointment... he was walking the dog and
says it was cold cold and snowy, said he turned back toward home and
now he's walking into the wind... brrrrr!... makes ya wanna move …
weeks of below zero weather... he said maybe the Dec. 4 appointment
is a good sign, no need for urgency. I said I'd put it in that
column... but I actually don't know. Sister Gus called this
evening... told a few jokes.
Day
5.
Sleeping
better in terms of anxiety... it comes but is quickly met by
awareness, being the observer. Watched a Tolle clip this a.m. where
he equates ego with the unobserved mind. That's a slightly new twist
to me. It's true that when i'm thinking about something I'm totally
there (not here), like I was walking in the cemetery aware of being
isolated, had a fantasy of a mugging and well into it realized/awoke
from it... so it was only afterwards that I was aware and
observant... during the fantasy I was “out”... unobservant,
occupied by ego, unconscious... as Tolle says, keep NOW in the
background.
Decided
to create a list to send updates, asking people not to call me
because my throat needs rest... tender from the biopsy... I don't
like repeating this story over and over to people is another reason.
I'm always more comfortable writing an email than speaking on the
telephone... my preference... shyness part of that.
Day
6 - 11
Some
impatience today (and yesterday)... panic attacks in the evening
watching a movie then reading a disturbing book, Dog Soldiers...
switched to some pleasant stories by James Herriot but even then mild
panic attacks which is to say, fear not easily overcome with the
observer. Wondering about the delay in treatment... are these folks
on top of it? Cyndia on vacation this week but suffering a cold,
maybe exhaustion, needs rest. Nug (me dog) has an engorged tick,
tried to get it with tweezers but he got upset. Turns out not a tick
- we have twin tumors, his quickly and expensively removed. Pretty
much otherwise just awaiting the scan... Daniel (son-in-law, M.D.)
dropped over this a.m. Had breakfast and I laid it out for him. The
anxiety comes, as it has, in varying degrees of intensity, and I meet
it with varying degrees of success but generally pretty well.
Day
12, - 16.
12/1
I called in late afternoon, Kelly confirming malignancy, saying Dr.
Patel is talking about robotic surgery, probably early January.
Wednesday next, 12/10, staff meeting after which, Thursday?, meeting
or call with me to lay out strategy, answer questions etc; I was told
2-3 days for biopsy results but it was two weeks or more and I had to
inquire. A glitch in their professionalism.
Folks
from music, Kathy, Mark, Judy now aware of and supportive, Mark gave
me a bottle of broccoli tablets which enhance synapses (?), Glenn
recommended book Refuge and Love, Medicine & Miracles,
Kevin book Opus 21 about someone with same kind of cancer, Dr.
Ron there at the right moment more than once with the right
suggestion, Janet recommending Chi Chong with testimonial that docs
had given up on a patient who completely recovered with Chi and is
envisioning healing, sister Patty has her group praying for me... all
miracles welcome!, I say. Tolle is my reality-based strategy.
Wing says studies have shown envisioning has a measurable effect. I
like to think presence produces the same.
OK,
so it goes on, day after day into the new year and all the way to
summer 2015, thirty eight pages, so far. Early December I had a full
body scan which showed spreading to one lymph node. This shifted
treatment, ruling out surgery in favor of seven weeks of radiation
with three chemo sessions over that period. December 23 I had the
tube inserted, a procedure I expected was in-office but I was wheeled
into the operating room just as I went under from the anesthetic and
spent the night in hospital. My daughter happened to come to town
that day so she and Cyndia visited. They said the room was really hot
but I was shivvering, seeking more blankets. When it was explained to
me what the procedure was I was grateful not to have been there for
it.
They
inserted a tube down my throat and could somehow locate it from
outside, cut an opening just the right size, passed the tube out to
the point where it was mushroomed and thus more or less held in
place. Features to allow pouring and plugging were added and voila!
Good to go. But very creepy. The first few weeks it was sensitive, I
had to hold it against my body to keep it from bouncing as I walked
but by the end of treatment I was hardly aware of it. Removal in
April, however welcome, was painful – a burly orderly had to work
pretty hard but he finally pulled it out, by hand. The mushrooming
end had to be forced out through the smaller opening. Ouch! The
feeding tube's function is as backup should treatment produce
side-effects that preclude normal eating. It proved in my case to be
a necessary supplement though I was never completely unable to eat.
Another
pre-treatment item was a visit to the dentist. I was led to believe
that there was a good chance I'd need some extractions because once
treatment began there couldn't be any side issues. It was with great
relief that my dentist pronounced extraction unnecessary. They fit me
for “plates”, molds of my teeth into which I needed to insert a
protective paste each night. Radiation/Chemo affect such that the
part of saliva that protects teeth from decay is severely reduced.
What saliva remains is very thick. Doing these plates each night
turned out to be one of the most tedious aspects of a very tedious,
sometimes painful regimen. Maybe because it was at the end of the day
when I did it, exhausted usually. The dentist expected me to keep the
plates on all night. I quickly discarded that idea, taking my
chances. The paste was mildly distasteful and as treatment progressed
it became ever more so, to the point of gagging. In fact I got to
where I couldn't floss or brush, so susceptible did I become to
gagging with the least attempt. Dentist was pleased, and so was I, to
pronounce the ol' teeth in good shape later in May.
One
last weekend before treatment began 1/6/15, and I was cautioned not
to “party” since I'd need all the energy I had to meet this
ordeal. I did attend a music jam, the last one for me of a regularly
scheduled gathering until I cautiously felt up to it again in late
April. I went in for the first day, had bloodwork and while awaiting
results got the first radiation, about forty minutes (subsequent
sessions ran about twenty minutes). Then in for the first chemo, a
seven hour ordeal. Attached to an IV on wheels that allowed mobility,
highly necessary as frequent urgent urination was definitely part of
the deal. Fortunately chemo has evolved to where an anti-nausea
substance is part of the “cocktail”. Anti-nausea pills were also
available for the following days. This proved necessary only a few
times over the three chemo sessions. At first I could read during
infusion and I got as far from the ubiquitous and annoying television
as possible. In later sessions I could only sit there lethargically,
completely drained, dependent on friends and neighbors for transport.
For the radiation I was fitted with a mask marked for the technician
and strapped to the platform to hold me in place during “zapping”.
Cancer
cells divide more frequently than healthy cells. This allows repeated
radation sessions to kill more cancer cells than other cells, for
they are only vulnerable when dividing. You lose healthy cells too,
thus the side effects. The seven weeks of treatment has become
standard for throat cancer, to get all the cancer without killing
you. But it seems to come close, I can testify.
I
concluded after awhile that everything I needed to know was offered
up by the staff or in the hand-outs but the emphasis was
lacking that I needed. They repeated as a mantra - hydration,
nutrition, hyegeine, very important to attend to all three. The
side-effects though, produced changes such that even ice cream tasted
terrible. At first I just couldn't eat properly and soon I was
experiencing the results. Psychologically this meant awful dreams,
nightmares, despair, pessimism, suicidal fantasies. I thought of
giving up, withdrawing from treatment and clearing up my “estate”.
I ran this by Dr. Saba, the oncologist whose emphatic response
re-ignited my survival instinct. “So your food tastes like
cardboard, eat it anyway. This is your one shot.” That week
I noticed blood in my urine and reported it. Bloodwork revealed a
severe potassium deficiency. So I sat with the IV once again, seven
hours. But the next day I felt re-energized, realizing the obvious,
that mood, how you feel, is highly affected by what you eat, or don't
eat.
This
was the first of several crises during treatment. The next was when I
became so constipated, no BM for over a week. Doctor Beitler, the
radiologist, recommended a laxative called Senna, failing to mention
that it's important not to use it too much, to avoid developing
dependency. The bottle had a warning on it however. Also he suggested
a softener. Doctor Saba recommended Pepto Bismal, a gentler, more
natural product. I tried the softeners, no luck. Senna was next, no
luck, even doubling the dose. Adding pepto bismal and drinking some
apple juice seemed to do it. In fact it over-did it. Now I had the
opposite problem.
Normal
things, like listening to Garrison Keillor while cooking, or looking
at a movie, were becoming high irritants. After fleeing a movie
Cyndia was watching, The Hobbit, I climbed into bed, very
discouraged, fearful, feeling once again like I couldn't deal with
this stuff. The Tolle ideas that had helped earlier with anxiety
weren't up to meeting this challenge. But lying there I realized, I
can't just passively accept this deterioration. I got up and ate a
whole banana, hard as it was to eat anything, knowing that bananas
tend to produce constipation – it worked, the diarhea was almost
immediately gone. My spirits lifted along with it. To an extent. All
through treatment I had disturbing dreams and dream scenarios where I
was doing repetitious, meaningless acts as though it were super
important that I keep repeating them. Every hour, sometimes more
frequently, I had to get up to pee. I would get into bed and say, OK,
I'm warm (it was winter), I'm comfortable, now rest. This despite
fits of coughing sometimes, very sore and sensitive throat and
tongue, “sunburned” neck, beard loss, hair coming out in clumps
(though I didn't completely lose head hair). I had to shave to be fit
for the mask and it didn't grow back for months. Still have no hair
under my arms and the beard is skimpy.
A
throat specialist coached me to do daily exercises. She said that
side effects can produce an inability to swallow properly, getting
fluid into the lungs and risking pneumonia. White fungus-like
accumulations grew in my mouth and throat and there was frequent
rinsing and gargling necessary to keep this at bay. At first I tried
to keep up my regular routine, songwriting, blogwriting, political
cartooning, reading but gradually it became a full-time job, doing
the hydration, nutrition and hygeine, along with rest. I could hardly
speak toward the end and had to limit conversation, avoiding
answering the telephone, relying on email – and of course it was
just then that my email program crashed and I had to rely on a very
clumsy alternative. The kindness and concern of friends and relatives
astounded me during this period. I appreciated this but also, in the
worst periods, avoided as much as possible contact with other folks.
Because I just had no energy for it and also because I was worried
about exposure, with my lowered defenses, to colds and flu etc;
Somehow, fortunately, I avoided all that. I was determined, while I
could, to take Marta into treatment. One day I saw a woman carrying
an infant rush over to a trash can and throw up. I carefully avoided
her and others on the train who could pass on their ailments.
Eventually a pre-arranged list of my neighbors took turns
transporting me to treatment, as I became so weak I couldn't do the
walk nor driving myself.
I
doubt that I've communicated the enormity of my nightmare, now mostly
passed. Anxiety, fear, dread psychologically, along with physical
discomfort, stress and pain. And I'm of course not alone. When I
would sign in for treatment in the morning there were others waiting
ahead of me, and soon behind me, a steady uninterrupted stream, all
day. Some holding up better than others but all affected, worn down,
sometimes to extreme fatigue. One day one person was on a gurny
awaiting transport to hospital and this seemed hanging over all of us
if we slacked off in our regimen. We were told that it really hits
the third week and gets worse right up and beyond the last treatment
(where you were awarded your mask as a mark of completion). This I
can attest, was absolutely true. The staff, doctors, nurses,
technicians, were all fabulous, nurturing and empathetic, coaching
and encouraging all with a good natured humor. The chemo team rang a
bell for my last treatment and insisted I do a little dance. I felt
in good hands from day one. Of course they're not gods, they make
mistakes, have bad days and there are often long waits for brief
meetings, lots of picking and sticking, bloodtests, throat tests,
scans, the rigorous treatment, depression and fickle weather,
parking, transportation malfunctions... all often a trial. But it
sure feels good to come out the other end alive.
Through
a non-profit called 4th Angel I was assigned a mentor who
had been through the same treatment I was about to undergo. Mike was
an incredibly articulate guide who helped me navigate. His emails
always cheered me up and helped me keep in mind that this too
shall pass. I naively expected maybe two weeks of recovery after
treatment ended February 27. Mike cast serious doubt on this
estimate. By late April I began to attend music jams again but had to
leave earlier than previously. My voice was easily strained but as it
came back I noticed that it was now a step lower in register and, as
others would comment, sounds amplified compared to before. I need an
afternoon nap most days. My endurance is less but improving. In late
May it was a grand thing to hear Dr. Patal say, “You don't know how
good it makes me feel to tell you that your scan results show zero
cancer.” I am apparently one of those susceptible to this viral
form of cancer. I asked him whether, since I'm susceptible, isn't
there a high chance I'll get it again. He said, “Very unlikely.”
I suppose the incubation period is longer than I probably have left
to live.
It
took the longest time for the pain in my throat and tongue to clear
up, still not 100%. That and taste are the lingering issues. It isn't
that I can't taste food, it's that so much tastes really bad and the
slightest seasoning puts fire to my tongue. For a long time I could
only eat bland hot breakfast cereals. For some reason I could
tolerate, even enjoy, cheese grits all through. Now anything cheesy,
potatoey is good. I've had pesto and quiche to good effect recently,
even pizza. Over the past two months I've seen great changes where a
little salt was firey to where today I had some salted almonds and
they were fine, some onion on a veggie hot dog. Soon I might be back
to the wonderful jalapeno. But food invariably disappoints me,
looking like what it is but never living up. I was told that I could
lose as much as 20% of my taste permanently. We shall see. I'm
interested in coffee once again and it is almost as it used to be.
Maybe this is an opportunity to rethink some food choices. I'm
vegetarian but still eat dairy and sugar. I've lost nearly forty
pounds, something I could never seem to do under my own volition and
I am determined not to backslide. I can drink a little wine if I
water it down. And until my eating is closer to normal I'm still
supplementing with energy drinks leaving me those, water and coffee,
so far, as the only thing I can really drink. With this gradual
return to normalacy (near-normalacy), I expect my harsh ordeal
of the first half of 2015 will fade into its measured place, with
everything else, in the great field of being – insignificance.